Progress Not Perfection

That's my new approach. I saw my oncologist today to go over the results of my bone and CT scans.  Here's the interesting part.  My oncologist was so concerned that the cancer had grown in size, she was thrilled the scans showed a decrease in size of the tumors. I, on the other hand, had been hoping that all the tumors were gone.  So I was slightly disappointed. Same result, different expectations, and, therefore, different reactions. My doctor has seen patients like me show increase in tumor size at this point, and I have no experience so figured I'd be at zero tumors by now.

Certainly, my oncologist's experience and reaction had an impact on me.  I am now grateful that the tumors have decreased even a little and that the chemo and Herceptin are still working. I learn quickly.

But here is what I am really thrilled about.  I get a two month break from chemo. Thank God. I need this break. The chemo has been kicking my butt to the point where I feel ground into the floor.  I am exhausted, my hands and feet are plagued with neuropathy, and now my nails are falling off.  My body feels very weakened and I would like some time to get my strength back.

So for two months I'll be receiving Herceptin every three weeks (the Herceptin will keep the cancer from growing) and I will be closely monitored to make sure nothing starts up again.

Plus, during this period, my oncologist wants to take a closer look at the metastatic area on my femur and consider using radiation on the spot. Based on the bone scan, the area is less active but the oncologist still wants to asses it. Compared to chemo, this all sounds like a breeze.

What struck me the most though is my oncologist's overall reaction. She's very relaxed about it all. There's no urgency, no air of "we need to deal with this now or you'll die." She views the cancer as something we can contain for a period of time and then go back to attacking.  This air of relaxation means I can relax too and enjoy my break, although I am fully aware that if the tumor markers go up, I will be back on chemo lickety split. My oncologist is demonstrating a progress not perfection approach, and that is a healthy view.

Even a Weeble has more hair than I do

I'm looking forward to the next social occasion I'll actually be able to attend since I won't be knocked out by chemo. And I'm looking forward to seeing the tiniest bit of hair growing back, even if it is immediately thrown off my head by the next round of chemo. I've become a person who is grateful for the very small things.  Hair growing back, the tiny bit of healthy nail showing at the base of my nail bed, the ability to even get up and attend a movie, any feeling coming back to my hands and feet. 

Progress not perfection. It's not a bad idea. And frankly, when you look like a Weeble, but with no hair, eyebrows, and eyelashes, progress sounds like a really fine thing.

Is This What Hell Looks Like?

I've seen the inside of Hell a few times. There was the stunningly abusive boyfriend of my early 20's who I was sadly head over heels in love with. After finally escaping from him, in spite of his stalking me, that one took years to crawl back from. When  I described the experience to people, they likened it to a stint in a Southeast Asian POW camp.  That was Hell.

Then there was the death of my beloved mother and sister within too short a period of time, deaths that could have been prevented had my mother not been affected by the after effects of food addiction and my sister not lived so deep in her food addiction, she chose death instead of recovery. Those losses were Hell.

Now I have metastatic breast cancer and this is a new version of Hell.  No one is yelling at me or berating me. The grief of death and loss is not rolling over me like a wall studded with sharp, poisoned knives. Instead I am being beaten by constant chemo and constant fear that comes speeding in like a roller coaster. And I don't even like roller coasters.

I keep reaching for bits of hope.  Let's be honest. My situation is hopeful compared to many.  Metastatic folks come in three varieties: one group will get the cancer and die soon after; another group will get the cancer, be treated, and go into remission for a while and then the cancer will come back and take them; the third group will get the cancer, be treated, and go into remission and live a long, long time.  We all want to be in that third group.  I sure as hell do.

At this point it's clear I'm not part of group one, since I'm responding so well to chemo, but instead a contender for groups two or three.  But meanwhile the chemo continues and with it goes my spirit, beaten down by constant exhaustion, neuropathy and other side effects.  I reach for any bit of hope to keep me floating above the constant hum of impending despair.  I just want to find out which group I'm in, two or three. So I ask my doctor about more scans, blood tests, anything to get a read on this.

Here's the deal though. Every effort I've made toward finding out more have slapped back at me, from seeing the CT scan and realizing this is real, really real, and then dropping into yet another depression fed by fear; to having the ultrasound technician scanning my liver tell me she measured a mass of 4.2 cm in my liver.  4.2 cm is what we started out as the largest tumor before chemo, and that tumor had astoundingly shrunk to 1.7 cm. Had it grown back?  This remark was made just before the weekend, leaving me in yet another weekend of terror, only ended the following Monday with a visit to my my oncologist who told me that this was not a cancerous mass but something benign.  Geez and cripes. What a waste of terror.

After this I decided I no longer cared.  Not about living. I do care about that. But I don't care about the scans or the results, at least not from the mouth of the technician doing the scan.  And I no longer care what group I'm in. Fact is I can't do a damn thing about any of these things. I can only show up, be scanned, hear the results, and then talk about the next steps in my treatment.

Here's what I want.  A break from chemo so I can experience a normal life, even for a little bit, and so I can fly back to Wisconsin and bury my sister (Melissa died in February 2011 and was cremated, but my brother in law is not doing well in his grief so seems to have avoided the actual burial in an effort to forget about all of this).  There are other things I want, like my hair back, my eyelashes to regrow (when you lose your eyelashes, you realize they actually do something like protect your eyes), to be able to walk my dogs, a social life, and on and on.  But those things will have to wait until I'm completely done with chemo. For now, I'll focus on a break from chemo and my sister's burial.  Small but at least it's something.

I've  also realized I can't look very far forward into the future, mainly due to chemo. So I've got no choice but to focus on immediate pluses and hopes.  Today is my last treatment with Taxol and my oncologist is already talking about using a new chemo formula for the next round (the Taxol has been giving me a heck of a case of neuropathy and my oncologist wants to avoid that becoming permanent). At the end of this round of Taxol, I'll have had 20 weeks of Taxol chemo. That's a lot.

Monday I go back to the hospital for a new CT and bone scan. Then the following Monday, 6/25, I'll meet with my oncologist to go over the results and talk about what to do next.  I do not believe in a God who does things, saves some, takes others.  But at this point I am a foxhole atheist, openly praying that this cancer goes away, that it won't be seen on this next set of scans. Even if it's shrunk further, that would be wonderful.  But nothing showing on the scan, that would be miraculous and wonderful.  So I'm in this foxhole praying, praying desperately.

And I'm focusing on the week break I get from chemo while we scan and talk, the one week I'll have of being awake.  I'm not quite sure what I'll do with that time. Walk a dog? Go out with friends? It's boundless. See what I mean? It's the little things that count and help.

And by the way, I wanted to thank all of you for your cards, emails, calls, assistance during chemo, going with me to doctor appointments, helping me with grocery shopping, helping me around the house.  I am deeply grateful to you all and every little thing, and I mean little thing, helps.  You all have been keeping me afloat and I cannot begin to repay you.  If I had an in with the kind of God who did things, I'd get you all straight into Heaven, or at least buy you a Slurpee. Wait a minute, the Slurpee I can do.  Slurpees on me, everyone!  Right now I'd really appreciate you all joining me in my foxhole for a prayer. Come on down. It's clean and dry and I got boxes to sit in.  Just do me a favor and pray for a miracle.  That would really help.

Evicting my White Trash Tenants

All this talk of my white trash cancer tenants got me thinking. Last night my friend Linda began proposing interesting ways to kill the White Trash C's. Linda envisioned blowing up their meth lab, along with other clever removal methods for the C family.  Now, I'm not willing to have a meth lab, even imaginary, in my body. But I do like the idea of inventing fun and interesting ways to evict my little White Trash Cancer Nemeses.

How I see it, Billy Bob, Mary Jo, and little Buford and Betty Jo are more your trailer park, windows covered with a Confederate flag, big-ass satellite dish propped outside, beer cans strewn across the lawn kind of White Trash family.

They have a big, fancy car but never buy new clothes for the kids, instead taking clothing from church give aways and other sources of donated items.  The C's have have been seen late at night pawing through donations dropped off behind Goodwill.  Meanwhile, their car has gold hubcaps that spin.

Here's where I thought things could start.  The C's live in a trailer in a trailer park of course. Now we know they've been roaming the hood, breaking out light bulbs in nicer neighborhoods, but they always go home to their well-used trailer at night. A trailer that could easily be lifted from its base by a well-timed tornado.

Let's make sure the C's are at home.  Mary Jo is chain smoking cigarettes, rocking rapidly back and forth in her ratty easy chair. Billy Bob is on the couch, chugging a beer. He belches as he finishes the can, and grabs another from a cooler, rubbing the can against his hairy bare belly to cool himself down.  Buford and Betty Jo are in the bedroom, posting taunts on school mates' Facebook pages.  They don't notice the sky darkening. They don't hear the sound of a train coming up toward their trailer.

The signs are a bit gentle at first, the curtains blow in every room. But then the wind picks up, sending curtains stretched up and away from windows in a constant stream.  Betty Jo is just  about to post a taunt on an overweight classmate's Facebook page, a taunt she has posted before.  The sound of the train comes closer.

Finally, Mary Jo gets up from her chair and looks out the window.  She sees the massive funnel heading straight to their door. "Holy shit, Billy Bob! Here comes a tornado!"

Billy Bob grabs his cooler and sprints for the door. He doesn't look back to the children's bedroom.  Mary Jo runs to the door as well, kicking the dog who had unfortunately gotten in the way.  Betty Jo and Buford leave their computer on the bed, and crawl into the closest in their room.

Just as Billy Bob opens the trailer door, the tornado is only several feet away. The wind grabs the door, Billy Bob's hand firmly wrapped around the door's handle, and he and his cooler are thrown high into the air and across the field. Mary Jo rears back but it's too late. The wind grabs her and throws her bodily after Billy Bob.  Somehow Mary Jo has kept her cigarette gripped tightly between her lips during the entire flight.

The children? They never left the trailer but instead rode that tornado pony far up into the sky, across the fields and kerplunk heavily back to the ground. The only member of the C family who survived is the dog, who sprinted out of the trailer between Billy Bob's legs, running into a ditch and hiding until the storm was over.  He now is named Gorman and lives with a very kind family who gave him his own dog bed and lets him sleep with them in bed at night. He is never kicked and only petted.

Interestingly, Gorman was a friend of Beatrice the liver and had been secretly telling her about the C family's damages to Beatrice's part of town. She could have had the C family arrested for all the damage they caused, but truthfully Beatrice is just as happy they and their trailer perished in a fast-working, wind-defying tornado of revenge.  Just as long as the White Trash C family are out of her life. That's all that matters.

Got another idea for killing off the White Trash Cancer family? Let me know.  We could have a nice series of killing the Cancer family. Let's make cancer killing fun.

Show Me a Picture

Actually, don't. Monday I met with my oncologist and asked her to show me the CT scan of my liver (aka Beatrice).  The idea was that once I saw Beatrice's less spotty surface, I would feel more hopeful, grateful for the progress made. Indeed, Beatrice was far less spotty and I am grateful for the progress.  But there's something about actually seeing the spots of cancer on my liver that sent a shiver through me. Before seeing that CT scan I could only imagine the cancer as this vague thing, a cartoon-like mass on my liver. Now that I've seen the darkened spots of disease on Beatrice's surface, I am sobered. There it is. The cancer.

My doctor and I went on to talk about next steps, more chemo sessions; an ultrasound  of my breast and liver to spot check the tumors; meeting with breast surgeon with thought that sometime soon the liver will be clear of cancer (that's a positive thought); and confirming status of cancer with another bone and CT scan in late June.  In the midst of this conversation, she casually spoke of the spot that had lit up on my femur, confirming that indeed this meant that the cancer had spread to the bone but apparently was responding to the chemotherapy. Before this I had the held on to the illusion that maybe the cancer had not actually spread to the bone, but that the spot on the scan was just some sort of fluke.  So much for illusions.  I was fully in reality now.

Seeing the actual cancer, talking about its spread to my bone, reminded me that even if I respond wonderfully, this cancer could kill me sooner rather than later.  It reminded me that I may have lots and lots more chemo sessions in my future. It reminded me that my life is different now. Dating is not really an option (who would want to date Stage IV cancer gal?), adopting a child is iffy at best, even planning improvements to my house or buying a new car could be a day by day affair.  I'm not saying that this day by day imminent death is my reality at this very moment--I still live in the hope that the chemo will knock back the cancer and the Herceptin will keep the cancer at bay.  But cancer is capricious.  It learns how to respond to the meds. It changes structure. It could come gallumphing back, just like it did to a friend who has breast cancer metastasized to the liver who has discovered that the cancer is now in her brain. Those kind of thoughts are depressing.

Finally, seeing that CT scan has driven home the thought that cancer is a permanent part of my life. I will be dealing with one form of treatment or another of this cancer for the rest of my life.  I don't have the luxury of dreaming of a life after chemo and surgery where I can just move on, seeing the last year as a distant nightmare.  As I told a friend  last night, the white trash have gotten out of the trailer park of my breast and they're roaming. The goal now is to make sure they don't roam too far and don't bust out too many more light bulbs. 

So there you go. I am stuck with my new white trash friends. I didn't invite them, I hate it when they tie the hound dog up outside, and I certainly don't want them bringing moonshine onto the premises.  The question is how do I make peace with these trailer park personalities.  And how do I stop myself from busting out my own emotional light bulbs in the process?

Right now, I don't know how to do this. I say prayers. I ask my dearly departed mother and sister for comfort. I try to block the thoughts. Sometimes I do okay with these efforts. Sometimes I don't. I do know that the continuing exhaustion of chemotherapy makes comfort harder--it's a bit like having a leg trapped under a log for a never-ending period of time and trying to stay positive in the thought that someone, some where will be here soon to free the leg.  At this point, I just want someone to free my leg, give me a break, and let me rest from the treatment, scan, news treadmill.  Maybe I'll throw it out to you all. Any ideas on how to escape this world of cancer, if even for a moment?  Go ahead. Throw an idea my way. I can take it.  Maybe one of you all can put the trailer park gang up for the weekend?  Nothing permanent. Only the weekend. Just saying.  It sure would be nice to have a break.  Any other ideas?

I Know. I'm Fat.

Well, not fat. I'm plump, Rubenesque, juicy. Okay, overweight. I'm overweight; obese according to the medical world.  And when you're obese in the Her2+ breast cancer world, the news ain't so positive, pun intended.

According to OncLive, December 2011, "A large study of HER2+ breast cancer patients shows that obese patients with this type of breast cancer had worse outcomes than normal weight or overweight patients."

That's a cause for concern.

So why am I obese?  I'm middle aged (read lowered metabolism); I take one drug that lowers my metabolism further; and I eat too much for this lowered metabolism.

Another factor in my obesity. I live alone and I hate cooking for myself. I mainly hate cooking for one because  in order to make cooking worthwhile, you need to make more food, resulting in leftovers.  And I hate leftovers. Well, I don't hate leftovers.  I dislike them.  And dislike leads to my not eating said leftovers. And then that leads to me throwing away said neglected leftovers.

The result of not cooking is that I eat things like cereal for dinner, or a sandwich, or on rare occasions, chips and dip.  My mother would not be proud. Actually, she'd be worried.  And now that I have HER2+ breast cancer, so am I.  This erratic eating pattern helps keep me obese. But let's also be clear. There's no problem with me getting exercise. I am not sedentary. I typically walk 3 miles per day. The issue isn't moving, it's portions and quality of food.

With this worry in mind, I started thinking, "Wouldn't it be cool to have someone cook healthy meals for me that I can just heat up?"  I'd experienced this to an extent with  ready-made meals from  Let's Dish, given to me by my lovely AA Sponsor. The challenge with Let's Dish meals for me though is that the meals are portioned for 3 to 6, which then puts me into the leftover zone again. My trash can runneth over. Not even great tasting leftovers can make me like leftovers apparently.

I need non-leftover creating meals. I need tasty meals. I need nutritious, pre-portioned meals. After researching reviews of ready-to-go meal companies, enter diettogo.  diettogo apparently offers individualized meals on a weekly basis, with each meal costing roughly $10.  Exit the leftover zone.

The goal of all this research and thinking is that by eating ready-made, tasty, portion-controlled meals, I will hopefully eat more happily and healthily.  The end goal?  Drop from obese to just overweight.  Any advantage I can get in this cancer battle, I'll take. And dropping from obese to overweight will hopefully reduce my risk of having "worse outcomes" in the HER2+ breast cancer world. 

Portion control shouldn't be this hard, but apparently it is for me. I have followed meal plans before, lost weight, only to go back to my previous eating patterns and gain all the weight back and more.  I need help.

Helping dogs lose weight is easy. I just cut back a little on the portion I drop into their bowl, and voila, the pound or so just drops off that dog's frame. So like my dogs, I need someone to drop a measured portion into my bowl, which I will then eat with verve and gusto, although unlike my dog Sidney, I won't gulp my food.. 

The not fat gang.

If I have to act like a dog when it comes to eating in my fight against cancer, I'm cool with that. As long as it gets me to a healthier, better shot at living, place.  I might even buy myself a fancy, crystal studded collar or a new dog bed to go with this latest effort.  Or I might start acting like I'm Oprah, and treat the lovely individuals at diettogo as my personal chefs, having at least one chef travel with me in all my journeys to fame. 

A dog. A celebrity.  I'm happy to be either in this case. As long as this experiment in ready-made, portion-controlled meals dropped into my bowl ends in a healthier advantage in this cancer fight.

Can you say Woof!?

A Tumor By Any Other Name Is Still a Tumor

But at least it's smaller according to last week's tumor marker reading.  I've read that tumor markers may not always be a reliable measure of active cancer in a body. But in my case my tumor markers appear to be reliably tracking with the shrinking of the cancer in my body.

Today's number? 37.8 (normal range is 0.0 - 38.6).

When I saw the number dropped in front of me I hooted. Hooted.

This has been a long process of chemo that I had hoped would be over on April 20. But after scans, I was told the cancer was not entirely off the liver so I would need 7 more weeks of Taxol and Herceptin. Even with the good news of the scans, showing a marked decrease in tumor size in the breast and on the liver, I became depressed.  Really depressed.

Added to this the news from my oncologist that a spot on my femur had lit up in this last bone scan, I became even more depressed.  The doctor intimated that the breast cancer might have already been in the bone but it hadn't been spotted. And the fact that it lit up this time might be due to the area healing from the chemo.  Either way, she told me not to worry.  Nancy, my Imerman Angel in New Jersey, also told me not to worry since bone metastasis tends not to kill people (Nancy is a 10 year survivor of breast cancer metastasized to the bone). She is my angel.

But still, I was down, baby, down, down, down. Comma, comma, down, dooby, down, down, down.

I finally reached out to others living with long-term cancer and guess what? It's apparently normal to be depressed after going through this much chemo.  Just knowing that helped me.  And several emailers mentioned that I could ask my doctor about taking a break from chemo just so I could have a month of having some strength.  And finally, my friend Lisa came over Wednesday night just to sit with me and listen to me cry and express my frustration.  That helped immensely. Thank you, Lisa.

It's all about reaching out and willingness to take help, skills I am not always good at. When it gets bad, I tend to isolate, laying on the couch, watching depressing documentaries.  Shall we call this suicidal depression soup?  It is one of my specialties.  A day or two of moping okay. But when it extends to a week or more, time to make those calls. Glad I finally did.

And now here I am looking at my tumor marker number of 37.8, an over 90% decrease from the starting number in the 500's.  That kind of news perks me up and will help me get through the upcoming exhaustion, neuropathy of hands and feet, and other side effects.

Now I'm even looking forward to my next scan. This tumor reading was taken after the first of 7 added chemos. Imagine what will happen once we get through this next round.  I deserve a steak with butter and sauteed mushrooms. I deserve french fries (I love french fries). I deserve a cash prize -- cash stuffed envelopes welcome in my mailbox.

It's just nice to get some straight up good news, no bad news chaser.  One thing is doing well. Very, very well.

It All Works Out

I am a planner. For those of you who know me, that fact comes out in, oh, about 5 seconds after introduction. Got a group needing to be seated at the restaurant?  I will work with the host to find the best table.  Looking for ideas to serve for a dinner party?  I might have some suggestions.  My helping ways may be a bit annoying at times, but I mean well.  And I like doing it.

That's why this cancer thing has me thrown for a loop.  Never mind the fact that I really have no idea how this will work out (will I go into remission for years or will I suffer bout after bout of recurrence?).  Weirdly, at this point, the most troubling aspect of Stage IV lite breast cancer of the liver for me is not the fear of death but my total inability to make plans.

I had several post-chemo appointments. An appointment on June 2 to add to a tattoo in progress on my leg. Had to reschedule that once I found out I needed 6 more chemo treatments. I had a plan to get my nose pierced in the middle of May. Have to put that off.  Trying to plan a time to fly back to Wisconsin to help fulfill my sister's burial wish of setting a head stone and then having a memorial picnic.  I have no idea when to schedule that.  All of this inability to plan is driving me nuts. This unexpected extra chemos and throw the plans out news threw me down so hard, I laid in my house alone from Sunday to Tuesday, not speaking a word to a soul.  I was depressed. Very depressed.  Thank goodness for anti anxiety drugs, an anti depressant, and friends with listening ears, once I started talking. And thank God I talked to a woman who has been going through chemo for 2 and a half years. That gave me perspective.

Another thing I like to plan is the chemo watch days for these hopefully last several chemo therapies (I ask a friend to spend the night of chemo and the night after because I'm afraid of having a delayed reaction to the chemotherapy.)  Plus, these two-night friendly visits really helps boost my morale by making me feel less alone in breast cancer.  I am grateful for all who have helped so far. Very grateful.

Anyway, when I was first told I needed more chemo, I was terrified to ask for additional help, that I was a burden. Then my lovely friend  Deborah told me to get over feeling like a burden and ask for help.  So I asked. Some people did respond right away, but others have been trickling in over time.  I originally interpreted this as "people are sick of me and tired of helping me all the time."  This might be true for some folks but obviously not everyone. And frankly, it's okay to be tired of helping.  I get tired too so go ahead and take a break. 

 What I didn't realize was the possibility that people may not respond right away, but instead respond at the time the help is needed.,  My Uncle Mike called on Wednesday and volunteered to sleep over this Friday after chemo.  God bless Uncle Mike and Aunt Carole. They're a package of blessing for me.  My friends Deborah and Carole emailed last night, volunteering to sleep over this Saturday night, the day after chemo.  Deborah and Carole, another package of blessing.  My friend Jo Ann called and volunteered to come to chemo with me, and since this chemo session started at 10:30, going straight over lunch, she fetched lunch for us both--there'd be no way I could take the IV pole to the local sandwich shop. Jo Ann is another blessings friend.

But wait. There's more.  My nephew Josh will be flying in from Wisconsin May 17 to cover that chemo weekend, and another nephew Ben will be flying in from Minneapolis the next weekend to cover that weekend's chemo watch. I have other friends who have not signed up yet but said they will. I can't tell you how much it helps to know that people care enough about me to help and to work to get me through this. I am truly, truly, truly lucky and blessed.

The main point though is that none of this help came the way I typically prefer to work, everything planned and scheduled well ahead of time. Because things weren't going the way I usually do things, I went straight to "nobody loves me" and "I'm a burden". But the help is coming, just when it's needed, in a one day at time kind of way.

I don't believe in a  higher power who sends lessons (I'll never forget the AA meeting I attended where a woman expressed hurt and anger regarding her friend's recent breast cancer diagnosis and then she said once she realized God was sending her friend a lesson, she felt better -- I thought, I don't want to sit anywhere near that woman because I might be sent a horrible less too).

This metastasized breast cancer ain't no sent lesson. But I do see how I am being forced to learn to live life truly one day at a time and learning to trust that just because everything doesn't all fall into place in my planned kind of way, that doesn't mean the help will never come and that the love isn't there.  I am an unwillingly-converted one day at a time kind of gal now. I have no choice. If I can add trusting that the help will come, after I've done the foot work of asking, to my conversion then that would be fabulous.  Let's face it. I am apparently not the Universe's social worker and organizer.  I am just a mere bozo on the bus, and I gotta learn to trust that when I pull the cord, telling the driver to stop at the next bus shelter, she will stop and let me gently step off the bus, rather than ignore me, forcing me to take a leap off the speeding boss, dropping into a roll to land on the side of the road.

The lesson?  I do have many wonderful friends and family and they are helping and they do care about me. The second lesson?  Just because that help doesn't come in a the way I expect, doesn't mean it's not coming and that I am not loved.  I am cared for.  I am helped. And I am grateful beyond words.

Thank you to everyone who has helped.  Your kindness has truly meant the world to me and made it possible for me to continue down this hard road to recovery.  You all are my support and my strength.  Volunteer any damn point you want. I will stop assuming things. And I only hope you know how much I love you back.

And, oh, you got problems or an illness? I got yer back and will help in any way that I can.